Taking It Up a Notch

My Dose Changes Tomorrow
So far I’ve been receiving 9 mcg/day of Blinatumomab.  Tomorrow my dose will be increased to 28 mcg/day.  This is the standard protocol for Blinatumomab.  If all goes well, all my future doses will be 28 mcg/day, even when I start my 2nd cycle.  The 9 mcg dose it to allow my body to adjust and make sure I don’t have any bad side effects.  While my dose is tripling, my body should be somewhat used to the drug now so the increase shouldn’t be accompanied by any new side effects.  Of course some people did experience new side effects, but they were in the minority.  And since I’m not a minority, I guess I should be ok.

7 Days Down, 2 To Go
Today was my 7th day of Blinatumomab.  I need to be observed for two days on the 28 mcg dose and then I’ll be allowed to go home.  I’m getting a bit stir crazy at this point.  I’m usually in my room for 23.5 hours of the day, which incidentally is more time in a single room than the federal prisoners at the Supermax spend (granted, I can at least get out of my “cell” anytime I want).  I’m not as tired anymore, which means I’m not taking naps.  While I don’t feel 100%, I do feel pretty good all things considered.  I still have some headaches, but those are easily managed with the Oxycontin.  I’m definitely ready to go home and today Home Care stopped by to educate Lindsey and I on what will happen.

My portable IV Pump
My portable IV Pump

House Calls
I really wasn’t sure what to expect when I got to go home.  I was picturing a big IV pole that I kept upstairs and another that I kept downstairs.  Or if Anthem was being stingy, maybe I just needed to carry it between floors.  I wasn’t sure how I’d get around out of the house or what my options will be.  All of those thoughts ended up being pretty silly.  My portable IV pump is about half the size of a kleenex box.  Maybe not quite even that.  The IV bags of blinatumomab won’t have any air in them, meaning it doesn’t necessarily have to hang off anything.  It is best to keep it upright, but not necessary.  The pump and IV bag all fit into a very small backpack.  So small it might look a little big on one of the kids.  I’ll keep the pump and IV bag in this backpack and just carry it around with me.  No large IV poles or hanging bags.

When I want to get out of the house, I can wear the backpack as a backpack, or sling it and wear it on my chest.  They had a fanny pack option, but I politely declined that one.  Overall it seems like it will be pretty easy to be mobile.  Definitely a lot more mobile than I thought I could be.

ET Phone Home
A home care nurse will come to our house every 48 hours.  They will change the bag of blinatumomab, draw my labs and change my PICC dressing when needed.  I will also have a remote station for vitals.  It will include a scale, blood pressure cuff, heart rate monitor, and thermometer.  We’re still waiting on an official frequency, but right now I think I will do vitals once a day.  The machine then dials the mother ship and passes my information on to a nurse for review.  Maybe one day I’ll have the kids run around for awhile and then hook them up to the machine to have their heart rate sent in.  It’s always good to assess the nursing staff’s response time to emergencies.

Take Me Out to the Ball Game
Today was an all company meeting downtown.  The meeting was in the morning and then everyone headed over to Victory Field to watch the Indians play.  The meeting has been in the works for awhile now and in May I was picked to be part of a group that got to sit in a suite for the game.  Then the Leukemia bug bit me again and I had to settle for a hospital room rather than my rightful amenities in the suite.  In between the meeting and the game, a few of my coworkers came over to see me.  It was great catching up with everyone and hearing stories about what was going on around the office and in life in general.  They even brought me two cookies.  Thanks guys for stopping by.  I really appreciate it!

And the Powerball Numbers Are:
7/21: WBC 1.2, Hemoglobin 7.3, Platelets 45
7/22: WBC 1.2, Hemoglobin 7.1, Platelets 50

I’ll most likely receive blood tomorrow, as they think my hemoglobin will be at 7.0 or below.  A little bag of juice before I’m discharged to give me a little boost of energy.  I wish the whole dracula thing were real.  It seems much more efficient to drink a bag of blood than wait an hour for it to be pumped into my body.  But then again, maybe that’s just me.

A Duck Dynasty Prayer
Patience.  Patience is something good to have in life.  I think I’m usually patient, but right now sometimes it is hard to be so.  I want to go home.  I want to know if this drug is working.  I want to be in remission.  I want to be cured.  All of this will occur over a long period of time, but I want to know now.  Let me focus on each day.  Take a deep breath.  Be thankful for where I am at.  Let me look no further ahead than midnight.  Let me not worry about the future, but rest in the present.  Thank you for peace.  Thank you for patience.  Thank you for another day.

8 thoughts on “Taking It Up a Notch

  1. Rob,
    I’ll be back to work in a few days and I hope and pray you won’t be there…and you know what I mean by that. I’m forever amazed how positive and humorous you’ve been through all of this but that just shows what kind of person you truly are. You’ve touched so many of the nurses, including me. I’m praying for you!

    Liked by 1 person

  2. I like to read what other people comment on your posts. I’m nosey like that. Weinzapfel wrote “you’ve touched so many nurses…” Can I assume she meant spiritually? Seriously, she is a blessed woman to know you and to care for you because you are so special to so many people and to God.
    You sound like you are feeling okay, but your numbers say you should feel worse, so I hope the blood gives you more strength.
    It’s an answered prayer for you to go home. The home care plan seems reasonable and will give you freedom while being treated.
    I continue to pray….for the drug to do its job, for tolerable side effects, for remission, and for a cure.
    Have a good day, Mr. Culross!

    Liked by 1 person

  3. Good luck, nephew. This process seems somewhat like a circus show, if I may say so. It’s Rob, jump through this hoop. OK, now jump through this next hoop. No wonder you need frequent naps. Looking forward to the day when the doctors put the hoops away.

    Love, Uncle Claude

    Liked by 1 person

  4. Good to hear your energy is increasing and home care will be more flexible than you guessed! Looking forward to seeing your cuties tomorrow at the pool!

    Liked by 1 person

  5. Prayers are continuing Rob. Letting go and letting God will be added to my prayers, I know you trust in the Lord, but I understand the impatience. It sounds like going home will be such a blessing for you and your family. It amazes me how many medical advances make peoples lives easier. Praise God.

    Liked by 1 person

  6. I’m just catching up here… an LLS volunteer received this med when it was still in trials. Was in remission in 15 days and allowed for transplant. He just had his first month of clear bone marrow and CNS. Lots of reason to hope.

    Liked by 1 person

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